Monday, July 27, 2009

Former NICU Parent and NICU Researcher Dr. Michael Hynan has been one of the researchers looking at the possibility PTSD (Post Traumatic Stress Disorder) in parents after the NICU. I wondered about the possibility of NICU admissions putting parents at risk after our NICU adventure in 2002, having studied PTSD in other settings.

In the article "Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response" published in Neonatal Network in 2005, I expressed some of my thoughts based on the research up to that time:

Hospitalization of a child can be a traumatic stressor for the family. NICU parents are at increased risk of having impaired relationships with the infant along with developing depression and anxiety-related disorders, including post traumatic stress disorder. The ability of parents to cope with the NICU crisis and its aftermath can directly affect the infant’s development.

Parental stress in the NICU has a short-term impact on the establishment of the parent-child relationship, with potential repercussions on the child’s long-term development. Many articles document the psychological, medical, and economic benefits of considering the emotional needs of parents with children in the NICU or PICU.

Thankfully the research seems to be supporting what parents have known all along about the stressful and traumatic nature of having a newborn in the NICU.

New Findings Acute Stress, PTSD and the NICUAn article published in Psychosomatics in Spring 2009 looked at "The relationship between acute stress disorder and post traumatic stress disorder in the neonatal intensive care unit." The research conducted by physicians and researcher at Stanford University School of Medicine investigated the number of parents experiencing PTSD four months after the birth of their premature or sick infant. They also looked at the relationship between PTSD and acute stress disorder experienced by parents immediately after birth.

At the end of their study they concluded:

The relatively high levels of psychological distress experienced by parents coupled with the potential negative outcomes on the parent and infant suggest that it is important to try to prepare parents for the expected psychological reactions that may occur in the event of a NICU hospitalization and also to support parents during the transition to home care.

Another recent study published in Journal of Developmental and Behavioral Pediatrics was conducted at the Children's Hospital in Los Angeles (University of Southern California). Researchers in this study investigated acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit. They discovered that "having a newborn in the NICU had a significant association with the number of mothers' acute posttraumatic stress symptoms." These PTSD symptoms experienced by the NICU mothers were not fully explained by their symptoms of depression or prior lifetime history of traumatic events.Ways to Help NICU ParentsKey findings of ways to help parents from the Stanford Study are:

So two of the ways to help prevent NICU parents from getting PTSD appear to be through education and support. NICU parents need to be educated about what to expect while in the NICU and what to expect once they are home. In addition NICU parents need to be supported both in the NICU and once they are home.

Tuesday, July 14, 2009

One of the things that stuck with both my husband and me after our NICU experience was the feeling that something else was going to happen, or to use the old expression, we kept "waiting for the other shoe to drop" or waiting for something else to develop, something else to show up that was initially missed.

For me getting back to normal was gradual. When my NICU survivor was 2-years-old I started working on an article on "Identifying, Understanding, and Working with Grieving Parents in the NICU" that was published soon after she turned three. Writing about the experience was a way for me to put it into some perspective.

By the time she was in preschool we were able to see that she was meeting her milestones and not suffering from any undiagnosed learning disability.

We had a couple of scares along the way, but with time eventually began to realize that she would not "break like a China doll" and that the other shoe was not going to drop.

Others Feel the Fear and Anxiety as WellPart of what helped me in getting over the feeling that something else was going to happen was discovering others also felt the same way. Over the years I have discovered that it is common for NICU Parents to continue to feel anxious and fearful that something may happen to the NICU child or to others in their family. It is also common for parents to experience flashbacks to their time in the NICU. Unexpected, sudden losses do that to people. They leave us feeling afraid and even vulnerable.

Former NICU Parent and NICU Parent Researcher Dr. Michael Hynan answers the question often asked of parents "Will I ever get over this [NICU experience]?" in this way:

No, you will not get over this completely. It is normal for you to feel the after shocks of this emotional earthquake.

Many of us high-risk parents have this vulnerability and these flashbacks to the NICU. And we also know that terror usually returns only briefly, and most of the time we can manage it as long as we realize that it is not unusual.

Dr. Hynan and colleagues in their research over the years discovered that these flashbacks and vulnerability are more common that most professionals expect.

Story Behind the ExpressionI've often heard the expression "waiting for the other shoe to drop" and wondered where it originated. On the alt.usage.english website I was able to confirm that the phrase means "to await an event causally linked to one that one has already observed". In the form "drop the other shoe", meaning "say the next obvious thing" or "end the suspense."

The best explanation for the origin for the expression was it was based on an old joke.

A guest who checked into an inn one night was warned to be quiet because the guest in the room next to his was a light sleeper. As he undressed for bed, he dropped one shoe, which, sure enough, awakened the other guest. He managed to get the other shoe off in silence, and got into bed. An hour later, he heard a pounding on the wall and a shout:

"When are you going to drop the other shoe?"

Ending Our Suspense as NICU ParentsWe were luckier than many NICU parents in that our NICU survivor did not have any major residual or ongoing problems. Her lungs were fine, her eyesight was good, she was meeting her milestones. I think by the time she was three we stopped worrying all of the time that something else would surface and slowly stopped listening for the other shoe to drop.

Monday, July 13, 2009

Miracle Bebe, one of the new resources on the Internet for preemies offers a collection of scrapbook resources designed by a NICU mother for free.

You can visit their Preemie Scrapbooking Freebies to see their gallery of pages that include NICU records, growth charts, lactation records, journaling pages, birth announcements, conversion charts and others.

These pages can be printed on your home printer, and then embellished with photos or hand written content.

More about Miracle BebeMiracle Bebe is devoted to families touched by prematurity, and we hope that we offer a place of peace and healing. They offer online resources that will bring you the ability to share your memories of your birth experience, the NICU journey and to home.

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About the Blogger

Kirsti A. Dyer MD, MS, FT is a respected physician, health educator, professor, author and former NICU Parent. She uses different identities Comfortdoc, Griefdoc, Momdoc, Professordoc, Nutritiondoc and Wellbeingmd depending on the circumstance. Since 1997 she has served the grieving Internet community with the Journey of Hearts website. She keeps several blogs on a variety of topics.

Author's Biography Information

Kirsti A. Dyer MD, MS, FT is a respected physician, an expert in life challenges, loss, grief and bereavement, professional health educator, professor, lecturer and author.Dr. Dyer is the Domain Designer for the Journey of Hearts website, created in 1997 as the first and only physician-based website devoted to educating people about the normal grief response. Dr. Dyer is also a former NICU Parent, author of the Free e-Book For Those Who Hold the Smallest Hands and founder of the NICU Parent Support Site, http://www.nicuparentsupport.org.

The blog and website were created to provide information, support and resources for NICU Parents and Families.